Taking care of a chronically ill child is one of the most draining and difficult tasks a parent can face. Beyond handling physical challenges and medical needs, you'll have to deal with your child's emotional needs and the impact that a prolonged illness can have on the entire family.

Luckily, this tough balancing act doesn't have to be done alone: support groups, social workers, and family friends often can lend a helping hand.

Explaining Long-Term Illness to a Child

Honest communication is vital to helping a child adjust to a serious medical condition. It's important for a child to know that he or she is sick and will be getting lots of care. The hospital, tests, and medicine may feel frightening, but they're part of helping your child feel better.

As you explain the illness and its treatment, give clear and honest answers to all questions in a way your child can understand. It's also important to accurately explain and prepare your child for treatments — and any possible discomfort that might go with along with those treatments.

Avoid saying "This won't hurt" if the procedure is likely to be painful. Instead, be honest if a procedure may cause some discomfort, pain, pressure, or stinging. But then reassure your child that it will be temporary and that you'll be there to offer support.

Many hospitals give parents the option to speak to their child about a long-term diagnosis alone, or with the doctor or the entire medical team (doctors, social workers, nurses, etc.) present. Your doctor or other medical professional probably can offer advice on how to talk to your child about the illness.

Tackling Tough Emotions

Your child will have many feelings about the changes affecting his or her body, and should be encouraged and given opportunities to express those feelings and any concerns and fears. Ask what your child is experiencing and listen to the answers before bringing up your own feelings or explanations.

This kind of communication doesn't always have to be verbal. Music, drawing, or writing can often help kids express their emotions and escape through a fantasy world of their own design.

Kids also may need reminders that they're not responsible for the illness. It's common for them to fear that they brought their sickness on by something they thought, said, or did. Reassure your child that this is not the case, and explain in simple terms what is going on. (You also may want to reassure your other kids that nothing they said or did caused their sibling's illness.)

For many questions, there won't be easy answers. And you can't always promise that everything is going to be fine. But you can help your child feel better by listening, saying it's OK and completely understandable to have those feelings, and explaining that you and your family will make him or her as comfortable as possible.

If a child asks "why me?" it's OK to offer an honest "I don't know." Explain that even though no one knows why the illness occurred, the doctors do have treatments for it (if that's the case). If your child says "it's not fair that I'm sick," acknowledge that your child is right. It's important for kids to know it's OK to feel angry about the illness.

Your child may ask "am I going to die?" How you answer will depend not only on your child’s medical situation, but also your child's age and maturity level. It's important to know, if possible, what specific fears or concerns your child has and to address them specifically.

If it is reassuring to your child, you may refer to your religious, spiritual, and cultural beliefs about death. You might want to stay away from euphemisms for death such as "going to sleep." Saying that may cause children to fear going to bed at night.

Regardless of their age, it's important for kids to know that there are people who love them and will be there for them, and that they'll be kept comfortable.

Just like any adult, a child will need time to adjust to the diagnosis and the physical changes and is likely to feel sad, depressed, angry, afraid, or even to deny that they are sick. Think about getting professional counseling if you see signs that these feelings are interfering with daily function, or your child seems withdrawn, depressed, and shows radical changes in eating and sleeping habits unrelated to the physical illness.

Behavioral Issues

Kids with chronic illnesses certainly require extra "tender loving care", but also need the routines of childhood. The foremost — and perhaps trickiest — task for worried parents is to treat a sick child as normally as possible.

Despite the circumstances, this means setting limits on unacceptable behavior, sticking to normal routines, and avoiding overindulgence. This may seem impossible, but spoiling or coddling can only make it harder for a child to return to daily activities. When your child leaves the hospital for home, normalcy is the goal.

Dealing With Siblings

Family dynamics can be severely tested when a child is sick. Clinic visits, surgical procedures, and frequent checkups can throw big kinks into everyone's schedules and take an emotional toll on the entire family.

To ease the pressure, seek help to keep the family routines as close to normal as possible. Friends and family members may be able to help handle errands, carpools, and meals. Siblings should continue to attend school and their usual recreational activities; the family should strive for normalcy and time for everyone to be together.

Flexibility is key. The "old normal" may have been the entire family around the table for a home-cooked meal at 6:00, while the "new normal" may be takeout pizza on clinic nights.

Also, consider talking with your other children's teachers or school counselors and let them know that a sibling in the family is ill. They can keep an eye out for behavioral changes or signs of stress among your kids.

It's common for siblings of a chronically ill child to become angry, sullen, resentful, fearful, or withdrawn. They may pick fights or fall behind in schoolwork. In all cases, parents should pay close attention, so that their other kids don't feel pushed aside by the demands of their sick brother or sister. It can help if parents reserve some special time for each sibling.

It can also help them to be included in the treatment process when possible. Depending on their ages and maturity level, visiting the hospital, meeting the nursing and physician staffs, or accompanying their sick sibling to the clinic for treatments can help make the situation less frightening and more understandable.

What they imagine about the illness and hospital visits are often worse than the reality. When they come to the hospital, they can develop a more realistic picture and see that, while unpleasant things may be part of the treatment, there are people who care about their brother or sister and do their best to help.

Lightening Your Load

The stress involved in caring for a child with a long-term illness is considerable, but these tips might ease the strain:

  • Break problems into manageable parts. If your child's treatment is expected to be given over an extended time, view it in more manageable time blocks. Planning a week or a month at a time may be less overwhelming.
  • Attend to your own needs. Get plenty of rest and, to the extent possible, pay attention to your relationship with your spouse, hobbies, and friendships.
  • Depend on friends. Let them carpool siblings to soccer or theater practice. Let others — relatives, friends — share responsibilities of caring for your child. Remember that you can't do it all.
  • Ask for help in managing the financial aspects of your child's illness.
  • Recognize that everyone handles stress differently. If you and your spouse have distinct coping styles, talk about them and try to accommodate them. Don't pretend that they don't exist.
  • Develop working partnerships with health care professionals. Realize that you are all part of the team. Ask questions and learn all you can about your child's illness.
  • Consult other parents in support groups at your care center or hospital or online. They can offer information and understanding.
  • Keep a journal.
  • Utilize support staff offered at the treating hospital.
Back to Articles

Related Articles

Going to the Hospital

It may seem scary to go to a hospital, but doctors and nurses are there to help people who are sick or hurt feel better. Read our article for kids to find out what happens inside a hospital.

Read More

Palliative Care

Palliative care provides physical, emotional, and spiritual support to sick children and their families.

Read More

Relaxation Techniques for Children With Serious Illness

Help ease your child's pain and anxiety with these exercises, complete with step-by-step instructions.

Read More

When a Sibling Is Seriously Ill

When your sibling has a serious illness, you may find yourself juggling some pretty intense and confusing emotions. Here are some ways to take care of yourself during this stressful time.

Read More

When Your Child's in the Pediatric Intensive Care Unit

It can be stressful whenever kids are in the hospital — and even more so when they're admitted to the pediatric intensive care unit (PICU). A basic understanding of the PICU can help you feel better prepared to help your child recover.

Read More

Caring for Siblings of Seriously Ill Children

By being aware of what healthy siblings are going through and taking a few steps to make things a little easier for them, parents can help kids cope.

Read More

Preparing Your Child for Surgery

Good preparation can help your child feel less anxious about getting surgery. Kids of all ages cope much better if they have an idea of what's going to happen and why.

Read More

Managing Home Health Care

When kids need intensive health care after they're discharged from the hospital, it's important that family and caregivers learn about the devices, equipment, and support they'll need.

Read More

Marriage Advice for Parents of Children With Special Needs

When you're in sync with your spouse, you're better able to care for your child. Here are 10 ways to strengthen your relationship.

Read More

Taking Care of You: Support for Caregivers

It's common to put your own needs last when caring for a child you love. But to be the best you can be, you need to take care of yourself, too. Here are some tips to help you recharge.

Read More

Financial Management During Crisis

Although the emotional price of raising a seriously ill child can be devastating, it's only part of the picture. Even during this difficult time, you have to consider the financial implications.

Read More

Balancing Schoolwork and Hospital Stays

Every student finds it hard to stay on top of schoolwork sometimes. So what happens when you have to miss a lot of school? This article for teens offers tips and advice.

Read More

Balancing Academics and Serious Illness

When your child has a serious or chronic illness, it's hard to think beyond the next treatment. But with planning and communication, you can help your child balance treatment and academics.

Read More

Note: All information is for educational purposes only. For specific medical advice, diagnoses, and treatment, consult your doctor. © 1995-2019 KidsHealth®. All rights reserved. Images provided by The Nemours Foundation, iStock, Getty Images, Veer, Shutterstock, and Clipart.com.

Search our entire site.